Abstract

Introduction

The cytoreduction and hyperthermic intraperitoneal chemotherapy (CS/HIPEC) procedure is complex, involving lengthy preparation and recovery in a heterogeneous patient group. Understanding the patient experience is essential to improving interactions with health professionals that is critical to recovery.

Objective

This study sought to characterize the early recovery and return to quality of life (at 3 and 6–12 months post-surgery, respectively) in patients having undergone CS/HIPEC, through structured interviews.

Methods

Two sets of interviews were conducted among 20 CS/HIPEC patients. Interviews were uploaded into QSR NVivo 10 qualitative software (QSR International, Australia) and coded by two study personnel. Interview 1 focused on initial treatment decision making and postoperative hospitalization, while interview 2 focused on recovery, supports, and return to quality of life.

Results

Among the participants, 60% were female and the mean age was 57 years (range 31–71). Diagnoses included disseminated peritoneal adenomucinosis (n = 6), appendiceal adenocarcinoma (n = 4), colorectal adenocarcinoma (n = 6), goblet cell (n = 2), and mesothelioma (n = 2). The first interview identified common themes of perioperative psychosocial isolation, lack of direction, and the importance of an established support system. Patients requested printed and audiovisual materials focused on addressing expectations. The main findings from the second interview captured patient experiences with longer-term complications, as well as surveillance.

Conclusion

Focused interviews with patients recently having undergone CS/HIPEC identified key issues that may be addressed in programs to improve the patient experience. These issues were distinctly different in relation to phase of recovery, and patient-centered programs designed with these factors in mind have the potential to enhance the recovery process.

This work was presented by VF as a podium presentation at the 13th International Symposium on Regional Cancer Therapies, Jacksonville, FL, USA, February 2018.

Appendix 1: Interview Questions

Appendix A: Structured Interview 1 (3 Months Post-surgery)

Who did you see (physicians or specialists)? What treatments were offered to you? How were treatment options presented to you?

4.

What were you told about prognosis/how serious the cancer was? (Were you given specific length of life expectancy with/without treatment, or probability of survival?)

5.

What treatments did you choose to have?

6.

Probe: What treatment did you choose?

(a)

How did you choose the treatment?

7.

Did you feel you were given enough information to be confident with the decision? What else may have helped you at that time?

8.

What factors helped you make that choice? What people helped you make that choice? [How much did you use the Internet for information? Social media?]

9.

Do you remember how long the recovery period in hospital was expected to be after surgery? What was the recovery period in hospital like for you?

10.

Were you expecting to spend time in the intensive care unit?

11.

Were you expecting to have an ostomy?

12.

Were you prepared or aware of the types of incisions and tubes you would have after surgery?

13.

Did you experience any expected side effects or complications?

(a)

Did you experience any unexpected side effects or complications?

(b)

How was the management or treatment of the complication explained to you?

14.

Did you feel “back to normal”? When was that?

15.

What was your recovery period like at home after discharge?

16.

In retrospect, would you make the same choice today if you could replay that decision?

17.

Probe: Would you tell me why? (Depending on tone of answer, change order of next probes:)

(a)

What were the benefits of the treatment for you?

(b)

What were the drawbacks? (Physical, social, economic?)

(c)

Did you feel you fully understood the benefits or drawbacks prior to the surgery? Can you elaborate on why or why not?

18.

What one support (educational, psychosocial, social support, spiritual or economic) would have been most helpful to you prior to treatment? After treatment? When would they have been helpful?

19.

Is there something you would have liked to understand better, or know more about, before deciding on surgery?

20.

If you could advise someone who has to make the same decision as you did, what one thing would you tell him or her?

Appendix B: Structured Interview—(6–12 Months Post-surgery)

Did you feel you were given enough information to be confident with your decision to have HIPEC surgery?

Probe: What else may have helped you at that time?

What factors helped you make that choice?

Probes: What people helped you make that choice?

How much did you use the Internet for information? Social media? Do you remember how long the recovery period in hospital was expected to be after surgery?

Probe: What was the recovery period in the hospital like for you?

After surgery and to this point, did you experience any expected side effects or complications?

Probes: Did you experience any unexpected side effects or complications?

How was the management or treatment of the complication explained to you? At some point in your recovery, did you feel “back to normal”?

Probe: When was that?How has your recovery progressed since our last interview?

FOCUS 1: PHYSICAL

Did you have any type of “setbacks”?

Are you having pain or physical discomforts?

Are you exercising?

(a)

How much/how often?

How are you eating? Do you enjoy food?

Have you had any problems or changes with your bowel habits?

Are you having trouble sleeping?

Are you having tiredness?

FOCUS 2: MENTAL/PSYCHOLOGICAL

What fears do you have?

Are you having mood swings?

Comparing to before your diagnosis and treatment: How has your memory been? Do you have any difficulty concentrating?

‘FOCUS 3: SOCIAL

Has this experience changed your relationships with your friends?

What about relationships with your family and partner?

Are you having any issues with everyday living?

(a)

Issues with finances?

(b)

Issues with travel plans?

FOCUS 4: SPIRITUAL/EXISTENTIAL

Has this experience with your cancer changed how you feel about yourself?

Probe: Can you tell me what ways you feel are different?

Has this experience with your cancer changed how you feel about your faith, or spirituality?

As time has passed, would you still make the same choice today if you could replay your decision?

Probes: Would you tell me why? (Depending on tone of answer, change order of next probes:) What were the benefits of the treatment for you? What were the drawbacks? (Physical, social, economic?) Did you feel you fully understood the benefits or drawbacks prior to the surgery?

Can you elaborate on why or why not?

Preparation and Education

What one support would have been most helpful to you before treatment?

After treatment?

Is there something you would have liked to understand better, or know more about, before deciding on surgery?

If you had a choice of how your patient information was presented to you, what would you prefer?

Probes:

(a)

In the form of a: brochure (pamphlet), short video, or a website

(b)

Are there any formats for educating patients on this procedure that you recommend that we have not already discussed?

If you could advise someone who has to make the same decision as you did, what one thing would you tell them?

References

1.

Improving the Patient Experience, The Beryl Institute website. Available at www.theberylinstitute.org. Accessed 30 April 2018.